10

Avery turned 10 on January 12th!

I can't believe I have a child with double digits!  Seems like he grew up overnight!

Here is our annual  birthday interview....

INTERVIEW WITH A 10 YEAR OLD

Best thing in the world ~ Sports

Favorite game ~ Playing sports

Animal I'd like to be ~ An eagle so I can fly

Favorite movie ~ S.W.A.T.

Skate boarding or bike riding ~ Bike riding

Worst subject ~ Math

Best subject ~ Reading

Best present ever ~ iPod Touch

Spots or stripes ~ Stripes

Favorite food ~ Hotdog

What do you collect ~ Bouncy balls

Wants to be ~ Surgeon

Best thing I've found ~ $20

Favorite word ~ Nebraska

Worst food ~ Vegetables

After school enjoys ~ Going outside

Hidden talent ~ Football

Favorite book ~ No More Magic

Favorite person to be with ~  God

Best thing about being 10 ~ Double digits

I love you more than all the stars in the sky! 

"You are my Sunshine!"

Sixty-Five Roses

Tonight I went to see Everlast play at the Waiting Room here in Omaha.  I don't know if many of you know who Everlast is, but he used to be in the rap group House of Pain.  Remember the song "Jump Around?" from the early 90's?  Anyway,  it has been awhile since I have gotten to see live music, so I thought Everlast would be a good one to go see since he just put out  a new album.

Before he sang the song Sixty-Five Roses, he explained that he has a daughter with cystic fibrosis.  So of course I had to come home and do a little research on the song.  This is what he said about it in an interview for the New York Times when he was asked if there was a particular track on his new album that he liked....

"There is a song called “65 Roses.” My daughter was born with a genetic condition called cystic fibrosis. As we did research we found there was this organization called 65 Roses, and we were trying to figure out why and it was like because that’s how kids who have cystic fibrosis end up pronouncing it: 65 Roses. The song isn’t about the disease, but it’s about the path of coping with and accepting this thing that has been brought into your life that you didn’t ask for. If you don’t get the right mental state as a couple and get yourselves together, it will break you and grind you into dog meat, sitting around waiting for the hammer to drop."

Something about the song resonated with me.   I know firsthand what it is like to have a child with a genetic condition and understand what it is like to have to cope with something that you did not ask to be brought into your life.

I hope you enjoy this song as much as I did!

It's been a bit of a while since I seen you smile 
It's been too long baby what went wrong 
Tell me how it got spoilt 
Tell me when it went bad 
How to get back to the times that we had 

We're both young 
And our spirits are old 
Now we're just angry and we act like we're old 
We can't even talk it out without one of us walking away 

You were 18 I just turned 29 
I was fresh out the coffin and 
Girl you were so fine 
The future was bright 
The world, it seemed new 
I was with some other woman 
I was thinking of you 
Knew how it hurts 
Knew how it feels 
Knew it how aches 
Cos the heart never heals 
We're so busy screaming that we don't hear the words that we say 

Taking out lumps 
Took a few blows 
Hit a few bumps 
Had our fair share of wounds 
We tried to see good 
Through all of the bad 
Put on our smiles 
Pretend we're not sad 
Gotta be tough 
Gotta be strong 
Gotta be right 
Can't afford to be wrong 
It's hard to sing the blues 
When you're hearing bad news everyday 

We worry too much for one couple to bear 
Hunger so much for one person to care 
Fooling our family 
We're fooling our friends 
Pray that the pain and the frustration ends 
Hope is a chance 
Hope is a dream 
Hope is a drug 
Maybe hope's a vaccine 

In the race against time I get down on my knees and I pray 
Shout at the devil 
I curse the lord 
Offer them everything I can afford 
I'd sell out my soul 
I lighten to see 
Tried to be righteous 
Tried to believe 
Prayed every prayer 
Kicked all of my highs 
For hours I'd stare at those beautiful eyes 
All of my problems seem to be melting away 
The smile on her face says daddy everything is okay 

In the race against time I get down on my knees and I pray

Oak Valley

I was fortunate enough to have a few hours to spend in Vinny's preschool classroom yesterday.

He has a fabulous teacher who has three wonderful para's in the room to help out!

Vinny has his own  chair to sit in when the class is participating in seated activities.  In this picture, Vinny is using the Big Mac switch to tell the class his name.

This is the schedule for the day...

Vinny's para is offering him two choices to decide which play station he would like to go to...

Of course he chose to go to music.

Vinny's grandpa got to spend the morning in the classroom with me...

He couldn't resist  playing with the other kids.

Vinny got to be the weather helper this day.

Playing music with his para.

 Vinny's locker.

He looked so big to me sitting in an actual chair!  His feet almost touched the floor.

Vinny and his teacher working on putting items in the cups.  

His teacher helping him make his name card.  She was giving him two choices.  Vinny would actually reach out and point to one of the cards of stickers.

 Check out all of these equipment options!  Vinny will be using the Pony Gait Trainer just like we have at home.

Kicked back reading (chewing) on books.

Playing outside in the gait trainer.

 Practicing walking with the PT and OT.

 Playing on the equipment.  I am surprised he allowed the PT to help him walk through it! 

Overall, I was very pleased to spend the morning at his school.  Everyone seemed so helpful and interested in Vinners!  I think I am going to like this preschool thing after all.  I hope that school will provide him with new opportunities to learn and grow!

As I was leaving the building, I walked out of his classroom and saw this teacher wearing this t-shirt!   This just re enforces my decision to send him to Oak Valley.  What a great school even though it is clear across town from us!

 I have to have one of these shirts, so I spoke with the gym teacher who put me in contact with the director of Youth and School Programs for the Special Olympics.  I am currently speaking with her about different programs that she gets into the schools......

preschool

We did it!  Vinny and I made it through his first day of preschool...

I thought this is how I would be most of the day, but I surprised myself by only tearing up when I put him on the bus!

Our day started out early...

Everybody was so excited (anxious in my case) for Vinny!  Grandpa had to come over and help see him off on the bus...

It is amazing how vulnerable you can feel knowing that you are turning your helpless, dependent, non verbal child over to others who do not know him!

Thankfully Vinny's amazing nanny Tina volunteered  to follow him to school and spend the morning with him and help educate the teachers on his quirky ways.

More about Tina another day....

She deserves a blog post all of her own.

Vinny didn't seem to mind being strapped in....as long as he had his sucky and woobie.

This is Gwen the bus driver. 

There is also an aide that rides on the bus to help out if needed.

Both seemed really nice and are already in love with Vinny.

Tina reported that everything went great and Vinny seemed to do ok in the classroom.

One of these next few days, I am going to sneak up to his class and observe how he does.

When Vinners got home, he was pretty tired and just chilled out with Leo on the couch.

Leo was all over him and said he was worried about Vinny all day.

So all in all, I think we both made it through the day just fine.

I feel so much less stressed about preschool. 

Just one more change in the routine out of the way.  My life seems to be so unsettled lately.  Definitely looking forward to getting into a new "normal" whatever that may be.

I will post soon with pictures of the other boy's first day of school pictures!

it's been awhile mom!

Avery said to me today that it has "been awhile" since I posted on the blog. 

Apparently he checks it regularly when he gets on the computer at his grandparents house.

Life has been some what crazy and not routine for us lately. 

This summer has flown by with birthdays and vacation.

I am hoping that soon we will have a "new normal", whatever that may mean! 

I feel like my head has been somewhat scrambled and searching for normalcy in our lives....



I am beginning to think there is no "normal" anymore?

I try to remind myself daily to  be happy and live life for what it is and appreciate what I have right now!

I tend to forget that at times...

Life will move forward with or without you....

My boys are growing up so fast!  School is starting in less than two weeks!

My "Little Bear" will be starting kindergarten...unbelievable.  Frankie has been by my side for the past three years going to therapies, appointments, and taking naps with me.

Vinners will be starting school as well.  As of now he will be going two days a week.  I am excited for him, but apprehensive. 

I am certain he will thrive and show me that he is ready.  Only if I felt that way.

I know that soon my head will unscramble it self and life will settle into a "new normal" routine.  I continue to remind myself to be patient!

7

Happy 7th Birthday Leo!

My crazy middle child is 7! 

Leo's "Birthday Interview"

Favorite thing the the world?  Spiderman

Favorite game?  Cars

Animal I'd like to be?  Monkey

Favorite movie?  Spiderman

Favorite thing to do outside?  Swim

Best ever present?  Spiderman toy

Spots or stripes?  Stripes

Favorite sandwich?  Cheese sandwich

Wants to be?  Taxi driver or architect

Most ticklish?  Armpits

Favorite word?  Spiderman

Worst food?  Hot dogs with mustard

What do you enjoy doing?  being Spiderman

One thing you are good at?  Drawing

Favorite person to be with?  Vinny

Best thing about turning 7?  I am going to be older like the bigger kids

Favorite thing to do with mom?  Take naps

Favorite color?  Red, white, and blue

Favorite food?  Pizza

Favorite song?  Never Say Never and Baby Baby by Justin Bieber

Favorite game?  Baseball

Skateboarding or bike riding?  Skate boarding

Hidden Talent?  Climbing

Favorite book?  Spiderman



Happy 7th birthday Leo Love!

I love you more than the moon and all the stars!